Volunteer Spotlight: Karen Driskill
My experience with cholangiocarcinoma began when my mother in law, Nancy, was diagnosed and succumbed to intrahepatic cholangiocarcinoma in 2010. In 2012 I became a volunteer for the Cholangiocarcinoma Foundation as a patient advocate with the help of Marion Schwartz, our Director of Advocacy.
In my work as an oncology nurse, and the experience of helping my mother in law, I felt a very strong need to be the voice for other individuals diagnosed with this cancer, and work to improve care for those with this disease.
Since 2012, I have attended many national conferences on behalf of our foundation where I network with other health care providers, patients, and advocates. Our foundation often has an advocacy booth that myself and others staff, where we hand out our brochures, discuss the activities of our foundation, and implore and encourage providers to direct patients and their families to our website for support. This is an excellent way in which to discover how physicians and other practitioners across our country, and globe care for this disease as well.
Attendance of sessions or educational meetings held at the conferences is another interesting advocacy activity that I do, where I gather the latest information pertaining to cholangiocarcinoma. I am especially interested in palliative care, which includes symptom management. When I have heard and learned something that I feel will be beneficial, I will then write a short paper or presentation to share with others through our website.
I have also been blessed to be able to be a part of our nursing advisory committee, along with many other wonderful and dedicated professionals. We have been working hard to develop a nursing standard of care model for those with cholangiocarcinoma, and it will be thrilling when these evidence based standards are presented to the medical and nursing community. My hope is that through our work, the best care will always be given to those with cholangiocarcinoma, regardless of the prognosis.
I’m so honored to be a part of this foundation, and to be a representative for something much greater than myself.